October has been declared a month for building Lyme Disease awareness, and to this end I would like to share with you my story. This is a piece close to my heart, close to a place I am not sure I am ready to share. But this is in aid of raising awareness, and hopefully helping others along the way. I have Lyme disease, a bacterial infection that affects me on all levels from my organs, tissues, and cellular function, to my energy, emotions, hormones, fertility and capacity for life. The toxicity, inflammation, depletion and damage that results from this infection causes me both chronic degenerative symptoms, overlaid with cyclic acute flare ups, affecting every system in my body.

In 2004, near Torquay Victoria, I was bitten by a tick. In other parts of the world, tick carried Lyme disease is at epidemic proportions, affecting millions of people worldwide. In Australia though, the Government and Medical system fails to acknowledge the existence of Lyme disease locally. As a result I went undiagnosed for over eight years, allowing the disease to deeply take root.

Each day brings something a little different. It is a cyclic disease with ebbs and flares as the life-cycles of the Lyme bacteria phase through, and different organs battle through the effects. There are staple symptoms though: pain, lethargy, scary heart pain & beat fluctuations, tremors, cold sweats, memory loss, hormone imbalances, numbness, and foggy brain – they are all part of my everyday life.

I HAD to adapt my life to the limitations this disease puts on me, but I refuse to let it bring me down. I consciously choose to push through, to force my body by pure will most days, so that I may live my life. I built a career around Yoga for this reason; it is one of the few things that helps me function and feel a little more ‘normal’. It helps keep me sane while avoiding the inflammatory seize-up effects in my body. It supports me mentally, emotionally and physically, keeping my body strong while stimulating my immune system to help fight this war. I’d be lost without it.

Many people haven’t heard of Lyme disease, let alone understand how debilitating it is. Lyme disease is considered non-existent in Australia, so as a consequence this disease is relatively unknown, often being defined instead by the symptoms and pathologies it causes – Fibromyalgia, Chronic Fatigue, Motor Neuron Disease, Guillain-Barre Syndrome, Lupus, Alzeimer’s, Juvenile Reumatoid Arthritis, MS, Parkinsons, etc. The irony is that is preventable if it is treated early. A preventive course of antibiotics and an antifungal straight away for six to eight weeks after a tick bite or possible infective exposure, this disease can be entirely diverted. If, that is, the medical system doesn’t let you down by misdiagnosing and delaying treatment. For me, eight years undiagnosed after a tick bite, means I have extensive and permanent damage to most systems of my body, and I will be dealing with this for the rest of my life.

My name is Korinne McNeill and I have Lyme disease. This is my story.

The alarm goes off. I breathe. All I can feel is pain, pulsing through my joints, my bones, my muscles, my head. Pain as though I have run a marathon, pulled an all-night bender …then got hit by a semi-trailer. My head pounds. It feels as though I have a clamp wrapped around it. Any movement, any light, any noise making it tighter. My heart… it scares me, it’s beating so hard and fast, and it hurts too. I want to throw up.

My arms, my legs, are heavy. They feel as though they are made of lead. I try to move them, try to roll over, trying to wake up, trying to send life into this lifeless body. But all I can do is breath. Just think, with every breath, “You can do this.” I look at my fingers, and ask them to move. I look at my arms and ask them to move. Then slowly, with more breath, and more time, I can sit up, but I can’t see clearly yet. My vision is blurred, my head is spinning, I feel like I am dying. I want to throw up.

A bit more breath, a bit more time, and slowly I make my way to the kitchen where I know that coffee and a few handfuls of supplements will offer some life support. Breakfast, and my blood sugar starts to rise, the energy will come and I will start to pretend to be normal. The pain, still there, the nausea, still there, my heart, still paining, my arms, still numb. “You can do this.”

I get in the car and drive to work, as what choice do I have? Every day is a battle – and I can’t call in sick every day. I fall asleep at the traffic lights, my body feels toxic, my body so tired, my energy eroded by pain. I pull over feeling the need to vomit. I breathe through it, “You can do this.”

At work some of my co-workers imply that Chronic Fatigue Syndrome, which I had been diagnosed with, is all in the head. Those who really know me can see my inflammation is out of control, I am in a dire state of dis-ease. My face is puffy, my eyes are dull, my soul is drained.For over eight years this was my un-named battle – I’d make it through the work week to crawl home and collapse comatose over the weekend, while Monday loomed all too soon to have to replay and do it all over again. Not every day was this bad, but many were, and any time I did something a little adventurous – like have an alcoholic drink, eat too much sugar or stay up past midnight, I was comatose for a week. Eight years and tens of thousands of dollars seeing GPs, physicists , endocrinologists, hematologists, neurologists, chiropractors, osteopaths, physiotherapists, Traditional Chinese Medicine practitioners and more. Eight years of CAT scans, ultrasounds, MRIs; countless blood tests all confirming that things were not right – yet not providing enough evidence to put a name it. I ran the gauntlet. The western medicine system bounced me from specialist to specialist to no avail.

“You have chronic fatigue syndrome.” I refused to believe it. A syndrome is a symptom, not a cause, and I knew that there was something else. Other practitioners declined to treat me because they didn’t understand it, and where perplexed by the way my body behaved. I looked okay on the outside, but my blood test results and symptoms painted a different picture. That is one of the biggest challenges for those with Lyme disease, they don’t always look sick, so people think they’re faking, or seeking attention.

I am an absurdly healthy person, I have to be. I do everything within my power to stay as healthy as possible. Yoga, meditation, clean diet, no alcohol, supplements, lots of sleep and more. But this didn’t help me with my diagnosis. As someone who presents healthy, when you sit in front of a GP with a list of over 30 big complaints like heart pain, difficulty breathing, hormonal problems, brain dysfunction, neurological issues – they look at you like ‘there’s something wrong with you alright’ – here’s a script for some anti-depressants, as they give you that ‘you’re a hypochondriac’ look.

To make matters worse I had friends telling me the same thing. “Perhaps it’s in your head. Maybe you need to talk to someone.” For me this was the worst and most challenging part of the disease. The physical elements I could deal with but the mental and emotional effect of constantly being told it’s in your head – even when you have tests showing that you are unwell and your body is not functioning properly – was the most defeating part. It created a mental war within me. As a result, I shut down. I stopped talking. I never spoke about how sick I was with anyone. This was the loneliest time of my life. My Naturopath, Monica Williams, my guardian angel, was the only person who knew the extent of how sick I was, the only person who believed me, and who I truly confided in. In fact it was her, my Naturopath, who suspected the Lyme disease, and suggested I see a GP in Melbourne who specialized in it.On March 16th 2012 I received a phone call that changed everything. My GP called to tell me that my tests for Lyme disease had come back positive, but that’s not all, all the other precursors that point to Lyme and other possible co-infections came back positive. This was the most emotional day of my life. I ended up curled in a ball, crying my eyes out for hours. Not because I had Lyme disease, but because of the relief, I finally had an answer. I was not crazy. I also knew that now I could identify the battle I was fighting, I could use more appropriate weapons. And finally I didn’t have to expend so much energy pretending I was okay. The treatment began and helped me feel much better, but it continues – an ongoing combination of alternative therapies and western drugs. I can be almost normal on some days, but totally debilitated on others. My digestive system is weak, I live on a gluten free, lactose free, soy free, low fructose and vegetarian diet – and even then I still have strong reactions to many things I eat. All my intolerances cause severe reactions –nausea, vomiting, blurred vision, headaches, diarrhea, and an aggravation in pain and inflammation that lasts for days. I have a low functioning pituitary gland, adrenal glands, and thyroid – and at this stage it is unlikely I will be able to have children. My liver is like a temperamental child – often leaving me exhausted and toxic, and throwing a tantrum whenever I overdo it. Drinking is not an option. Sweats, tremors, numbness, shortness of breath, dizziness, black outs – all symptoms that come and go. My heart still scares me, waking me up in the night with pain. Sometimes feeling like it will explode, other times feeling like it wants to conk out. My brain struggles, memory the most obvious symptom with many others as well. Pain and the lethargy always there, the toxicity, the inflammation determining how severe.

But I am doing this. I am choosing not to be a victim to this disease. I am fighting it. I am riding the ebbs and flows, the growth of the bacteria, the killing of the bacteria and just doing what I can. I am ok. I choose to be happy. I choose to think strong. I may not feel the kind of ‘normal’ I felt nine and a half years ago, but I have made a better life along the way. My condition forced me to leave a stressful Marketing role in the corporate world, and rebuild my life from the ground up. It has led me to a life that I love, sharing my passion of yoga, health and life with other people. I am so grateful I can make a living doing this. Yoga is the one thing (other than sleep) that consistently gives me more energy than it takes, and it is now my work.

Others have not been so lucky. Lyme disease can be paralyzing, disabling and even fatal. My doctor said that if I wasn’t as stubborn, healthy and grounded as I am, I most likely would have been paralyzed by the time I was diagnosed. Through this experience I have realized that I have to share my story. I now tell people that I have Lyme disease, not for sympathy, but to raise awareness. I want people to know what it is, so that others don’t have to go through the suffering of misdiagnosis, and long term implications that I went and am going through.If you or anyone you know are really unwell with a host of unexplainable symptoms, have a look at the website below, familiarize yourself with the symptoms of Lyme disease. If you suspect it, then get in touch with one of the GPs through the Lyme Association of Australia and get tested. Lyme disease is a world-wide problem. If you have it, and you catch it early enough, you can treat it. The method of transfer still needs a lot of research. It is possible that if a tick can infect a human, could mosquitos? With or without a tick bite, knowing about this disease could change your life, or someone else’s.

Korinne, you impressed me the first time I met you. Now hearing your story just confirms to me how special you are. Thank you for sharing, I won't forget your story and will continue to admire your determination and passion for life.

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donna

9/30/2013 11:25:41 am

Now breath my darling! You have shared with the world and it will be ok, Warm, nurturing hugs of joy to you. Uplifting and inspiring!!

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Sue

9/30/2013 12:05:28 pm

With tears in my eyes I finally understand the daily struggles that you have told me a little about. Thanks for sharing Korinne xx

Thank you Korinne for your story, I have heard glimpses of your story over the time I have known you and I have seen the way it has affected you and seen you go though your ups and down which always showed me how strong you truly where with how hard you fought and how you refused to ever give it ground which was always unbelievable to see. Even though we no longer chat like we used to after yoga or before I will always remember you and I will always see you as an inspiration as I always have.

Stay Strong :)

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rosie

6/12/2014 05:16:43 pm

corrine i would like to know who diagnosed with lymes i live in geelong and have been suffering for years with symptoms if you could let me know of any one to contact or any gps in geelong i would appreciate muchly.

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Alyson

9/30/2013 07:06:13 pm

With tears in my eyes your daily struggle with just getting up is so appreciated by so many people that you have touched through your passion of yoga, we love you and the green room, stay strong you are an insipiration

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Ann

9/30/2013 08:29:21 pm

The first time I met you, I was inspired by your enthusiasm, zeal for life & your caring to improve all around you. You help everyone to be the best they can, mentally & physically, you are kind. After awhile I found out you were poorly & how it affected you. But except for one time you have never let others know. You are beautiful, brave, an inspiration and one of the loveliest people I know. Keep smiling, keep shining your loveliness to the world. They are lots more people for you to inspire. Please let us help you too, there are lots of people who would give you the world if they could. Love you Korrine , Ann xo

Congratulations Rin on putting ur story out there I am sure it wasn't easy. I hope one day u and or the doctors can find a cure. Ur mental toughness and physical strengths are one to be admired.
A good friend and our thoughts are with u on this tough journey
Freshy & Petrina

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Elsa

9/30/2013 09:10:59 pm

Beautifully written Rin, I'm so very proud of u and so lucky to have u in my and my families life xxx

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Kirsty

9/30/2013 09:48:37 pm

You are an inspiration Korrine! Thank you for sharing your story x

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Sally

10/1/2013 07:34:05 am

Well written darling girl. Very inspirational. You're one tough cookie and we are all very lucky to have you in our lives. Love you xxx

Thanks for sharing your story Korrine. It is so important to get this information out. I was diagnosed with Lyme and Co 1 month ago. I am currently in Bali doing EBOO IV ozone, Cowden Protocol, IV vit C and Rife therapy. The IV ozone has been amazing - I have had no pain since the first session and much less brain fog. Wishing you well, Anand

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Nicole

12/11/2015 03:56:57 am

Hi, how did the ozone treatment end up? I have just been diagnosed with lyme and co and am probably going to get the treatment in QLD. I am scared though. Just wanted to talk to someone who did it.

Thank you so much for sharing. I am trying to hold back from crying reading this. I feel like I am reading my life story of the past 5 years. I too was diagnosed with CFS 4 years ago. After being bed ridden and house bound and having to give up everything for many years I finally built some strength to move from Tasmania to Byron Bay to continue my healing journey. It was only a few months ago that I received the news that I tested strong positive for Lyme disease. Like you I was an emotional mess hearing this, mainly because I had finally found THE CAUSE after soo many years. I couldn't believe it. I have spend so much money on seeing over 30 practitioners, sending urine, blood, stool, saliva all over the world to find various dysfunctions but never a true cause and treating these secondary issues never really brought much relief.
What I have to do daily to be able to be a relatively functional being is crazy!
You might be interested in my blog where I share my healing protocol, recipes etc.
I wish you all the best on your healing journey! So much love, peace and blessings, Amy
http://holistichealingwithamy.wordpress.com/

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Korinne

10/2/2013 12:37:51 pm

Hi Amy! Sorry to hear about your struggle. I read your blog, its very insightful and your protocol is not dissimilar to my own. I even have infrared heating at the yoga studio I own because it has changed my life - and one hour of yoga in the heat reduces my pain, inflammation, and helps detoxify. It does sound like your journey was very similar to mine, unfortunately we are not alone. Hopefully our stories can help others get a diagnosis sooner!!! I love the 'whats your flavour' in your blog. It's my attitude to life - but especially with health. Not everything impacts everyone the same, as such not every treatment is going to have the same outcomes. So for us its a journey of trial and error - or as I prefer to think of it - a journey of starting to know thyself - or the body we are residing in a little better. Good luck with your journey. I hope that the near future brings less symptoms and more life to your body. xxx

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Korinne

10/2/2013 12:40:02 pm

Thanks everyone for such beautiful words. This is just my journey, and I am grateful I have such amazing people in my life!

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Maya

4/10/2015 10:36:36 am

Korinne, your story is almost identical to mine, I was bitten in werribee 5 yrs ago and like you undiagnosed for 5 years after countless useless gp's and specialists all "in denial".Thanks to them i am completely deaf in one ear and ENT diagnosed my other ear is now deteriorating. Like you all other organs are affected and my skin is so badly scarred from rickettsia I am a mess. Yep Early Diagnostic Approach is life saving but none of us lymies were so lucky 😞 All the best

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Diane

7/27/2016 05:11:21 am

Korinne, thank you for sharing, you are touching so many hearts by giving us the gift of your story. I am watching by son deteriorate day by day and feel helpless as you did, in trying to get him help. Maya, your post leaped out at me as we are also in Wyndham. I would love to chat with you further.

keith

10/2/2013 08:43:26 pm

Korinne,

Thank you for your courage in talking about your situation,
I live in Wodonga and have Lyme disease also, contracted it overseas in may 2012 and are currently being treated by a Llmd in Sydney.
I can understand how you felt when you received your results, i too cried for the relief on knowing that i was not crazy and that after many normal blood tests something finally showed up.
I know it's a battle, to look ok or well on the outside but to feel ill and disconnected on the inside.
Thank you for having the courage to tell your story and i hope you get back to full health.

Keith.

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Bee McNamara

10/3/2013 11:07:29 am

Miss Korrine now you made me cry. I am honoured to have you as an instructor. You are wonder woman, your are stong, you are simply AMAZING!!!!! Xxx

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Leah Cassidy

10/3/2013 12:11:23 pm

Miss Korrine
I have been missing you and the beloved Green Room over the last 6 weeks and can't wait to come back next week!
Your courage in sharing your inspiring story is testament to your strength, positivity and beautiful soul. It made me sad to hear of your daily struggle just to lead a relatively 'normal' life day to day. And especially sad to hear that for the most part you felt that you were going through it alone. I hope you know that everyone who comes to the Green Room warms to you immediately as your soul radiates and projects your positive energy. I enjoy seeing your smiling face before and after every class, and now that smile will mean so much more.

Can't wait to get back into it next week!
See you then amazing lady xxx

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roslyn cockerell

10/12/2013 02:31:10 pm

your story was very inspiring to those who need to deal with this illness and to get awareness out there to those who have no idea, my niece is going through the same horrid cycle and until we were faced with this and looked into the lyme disease I had no idea what people have to deal with i was so ashamed to be Australian knowing so many people are suffering and have no help and so many people are ignorant to the disease, my niece is waiting for her blood test to be confirmed it got to Germany last Friday she has a lot of the same familiar symptoms as you and getting progressively more health problems she had a tick live under her skin for 8 months and the gp kept telling her mother it was just a blister until the tick surfaced and that was nearly 3 years ago I admire your strength and glad you have spoken up I wish I knew more before my niece become so ill so thankyou hopefully people keep talking and others start listening

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Luke

10/15/2013 06:26:07 pm

Speechless.. the battle with disease is enough.. but the social, mental, emotional struggle that you endured with it.. and while still fighting your own battle you make yourself vulnerable publishing this so that you might help others! There are people who come in to our lives.. they influence us.. and they inspire us to be better people. No matter how briefly we know them.. we're never the same.. and we always remember them.. I just want you to know that you're one of those people.. such an inspiration..

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Nicky

11/13/2013 03:18:41 pm

Hi Korinne I've been having symptoms of Lyme for 18 months,how can I find a naturopath or go xxxx

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Korinne

11/14/2013 10:36:01 am

Hi Nicky,
Dr Geoffery Kemp on Burke Rd Camberwell in Melbourne is a GP helping people with bacterial infections. If you are not based in Melbourne I would suggest looking on the Lyme Association of Australia webpage as they have a number of different GPs that they recommend.
Good luck and stay strong! Health is worth fighting for.
Korinne x

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Karleen

2/26/2014 08:17:06 pm

Korinne, Words can't express how proud of you I am. Thank you for sharing your story on your disease. I can't even imagine how it feels to be in that much pain every day, Missing you xx

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Ian

1/15/2017 07:03:34 pm

Hi Korinne, could you please tell me who the LLMD you saw in Melbourne, I would be keen to make an appointment, as I am a few years into this symptom/testing to and from without getting anywhere

This was gone to be all out on this that was for the limelight the all were happen due to this article that was good. I need to share this with others so they also can get this knowledge so I share this on my channel for getting subscribers.

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Authors

KORINNE McNEILL: Yoga is life for Korinne. Creator of the Green Room Korinne is grateful everyday that she gets to share her passion with others.DAVE VAN DAMME: An information addict, Dave loves exploring the scientific reasons behind why yoga makes you feel awesome.